PICNIC IN THE PARK 7.27.13 It is hard to believe we are just one week away from our biggest Duchenne derailing event this year ~ our Picnic in the Park! We have close to $30,000 in product donations to give away! We are so excited for again we have awesome entertainment, food and fellowship including; Jabez, The Polka Pirates, The Cleveland Breakfast Club, Hole in One, Dunk Tank, JUNGLE TERRY, LASER TAG, PIN BALL, Famous Dave’s, Tommy’s Pizza and Dairy Queen.

36 x 4 Box Elder Daisy $500 Made by John Owens' grandpa Ray.

Please join us on Saturday July 27 from 4 pm to 10:30 and help us derail this horrific muscle killer! The event is Free and is really as you know all about Celebrating our precious life!!! Click here to view the many many raffles! Make a point to be with us!

Silent Auction Owen's Choice "Roadrunner" by Brad Falkinburg in the making

Thank you also to our many volunteers that always make this night a huge success!

Owen ~July Voice of PPMDWe were so excited that Owen was selected as the July Voice for PPMD. He conducted a very cute interview with Will Nolan. Please check him out at this link and share the great work that Parent Project is doing for our boys!

FDASpecial thanks to our friend Rachel Manias who literally was pounding the pavement in DC yesterday trying to encourage Senator Brown and Senator Portman to sign the FDA letter urging the FDA to move expeditiously with respect to a request for the approval of the accelerated marketing application for eteplirsen. PPMD, Jett Foundation and our friend Jenn McNary have been working tirelessly to push our government to approve this potential life saving drug….. and still no word, but we are trying.

Jett Ride!We had a blast this Wednesday with the 2013 Jett Riders! We had tons of fun in the pool, slip and slide and with our family. They set off Thursday morning for Massilon and will make their way to Point Pleasant NJ on their cycles by August 3! Safe travels and God bless you all!

“You hold him close so you'll never forget how his heartbeat feels No, you never will”Monday night, I fell asleep to the sound of a cherished heartbeat. You see, after an hour or so of tucking Owen into bed, he was still awake. He called to me with his shirt up, hand on his chest and tears in his eyes. I immediately knew he was covering his heart. He said, “mom, this hurts, don’t touch it.” I asked him if I could have a listen to his heart, I did and it was racing. I looked up and saw that he was crying (not really realizing it when I first came in). I asked him if he was in pain, he said no it just felt weird. I asked him why he was crying, he broke down. And shook his head I grabbed his hand and asked kissing it, “Please tell me, honey, you can tell me anything.” After a few thoughts whirling in his head and a wipe of a tear, he said, “I’m scared.” It was a calm night, in fact the perfect summer night, no rain, no thunderstorm to fear, no scary movie just watched no homework in sight, (what could he possibly be scared of at this hour?) “Oh, honey, what are you scared of?” He said, “You know, my legs, now my arms” then he looked down toward his hand on his chest and I knew then he was afraid for his precious little heart. (Sinking feeling inside of me…. How to respond?) I asked him to remember what Dr. Arruda said about his heart at his last visit, he said, “She said it is perfect.” I told him that she was right and had him repeat that Dr. Carl said his lungs were in great shape. Few more deep, deep tears, “but I’m scared, mom.” He gave me a monster hug and I told him that it was ok to be scared, but he does not need to be scared all by himself. I told him we are always by his side and that we love him so much. After a great long hug, I went to get Tony and we decided he needed to sleep in our bed. I think we are all pretty much scared, running scared in truth, and really needed each other close to just soak in the present and the love that we hold so deep for each other. Of course, once settled in Tony and Owen engaged in Princess banter and called each other Princess Leah then went through the manly mental toughness they share. Though I watched as Tony fell asleep soundly surrounding himself with Owen. As I settled in, he threw his arms around me and snuggled me down so my head was on his heart. I would not move an inch, nor did I for a very long time as I listened to the heartbeat that I hope to never forget exactly how it feels. No, I never will. ………..

Please join us 7.27.13 and help Owen not be scared anymore….. God bless you The Dumms

Wade got a doozy this week – full on toenail / half the top of his big toe STUBBED. So much so, that he will not go in the pool because it hurts too much. Sure sign of summer, right?

Running barefoot, carefree and WHAM, there it is. So at the Dumm’s we are in full swing of Summer. Thankfully, Swim Tuesdays finally arrived all be it late due to our unprecedented and awesome summer vaca. We had a memory building vacation out to GA, SC, TN all to pick up the new ‘Juggernaut’ (that is what the boys call it) and yes it is a force to be dealt with ~ our new handicap accessible all out Nissan converted cargo van (if this van’s a rockin…) All kidding aside, how lucky are we to be able to transport our clan flawlessly! We picked it up in Georgia (Tony, Rutger and Owen had a heck of a time which included a trip to the Vet and the ER, 2 AM arrival and 3 hour U-Haul breakdown on a GA State Highway with 3 trooper cars …. but when all was said and done they made it) and drove it for 8 days throughout the South vacationing and soaking it all in, because that is what we all need to realize this is exactly what life is all about – SOAKING IT IN!

Swim Tuesday Slip and Slide using our old JOA posters

Our trip delayed our traditional swim Tuesdays and the first one was no different from the last, AWESOME. Those that come, I am thinking, have no idea what it means to be present for JO and for all of us to build memories. As simple as it may seem to sit by the pool for a few hours a week, the fellowship, laughter and joy that is spread can’t be replaced by any video game! Well, I certainly hope I captured your attention in these first few paragraphs because this update will most likely be the longest yet. If you have not figured it out, I try very hard to be short and sweet. Well the short part is absolutely out on this one ~ so grab 5 minutes and honker down because if you stop reading you will miss A LOT! I hope I can keep you at the ‘sweet’ part!

Picnic in the Park ~ Saturday 7.27.13 I can’t believe this is our sixth Picnic in the Park. We were honored this month to be the feature article in the North Royalton Life Magazine July addition. We had the opportunity to share the history of our picnic and that only 6 years ago was the first time we were overwhelmed with your support! Please consider joining us at German Central on Saturday 7.27 we have fantastic food, music, games and amazing raffles. Most important, it is free to attend! Please share the poster with everyone you know! We of course count on our volunteers to make this day a smash, please sign up at our volunteer page by 7/10 ~ click here

We plan to put baskets together on 7/5, 7/6 and 7/7 ~ and we need help. Please email me at jen@joain.org if you can help! It is quite a production assembling all the generous gifts from Northeast Ohio and beyond. Any help is much appreciated!

Please click this poster to download your own to share with everyone you know! We love your support so share it!! Thanks

Check out this auction item in the making, Owen’s Choice “Road Runner” Each year, Brad Falkinburg of Falkinburg Decoy’s creates Owen’s favorite bird and auctions it off at the picnic. Owen’s Aunt Dee has been in competition with Owen’s Uncle Ward each year for Owen’s Choice… so bring your dollars because the bidding gets pretty high for these select pieces! We will post our auction items in a few weeks, so stay tuned.

Wanna Run 600 Miles?We did! 5.19 our Moving Spirit team ran over 600 miles collectively at the Cleveland Rite Aid. Each step brought us $20,000 closer to a cure! So exciting that Evan Rosberil (9) and Pat Dailey (um well we won’t tell you his age) are the 2013 Moving Spirit Heroes. Please check them out at our Heroes Page. We were thrilled to give our money raised from this run to PPMD specifically for cardiac research for our Duchenne boys, to learn more about where our funds went, click here.

Ok how about 52.4 then?Elsa Kilbane and Brandi Rucinski will represent JOA in the Chicago Marathon through PPMD Run for our Sons on October 13, 2013. If you recall Elsa ran the Akron Half Marathon in September 2012 and is our JOA Hero, she recruited Brandi for the Chicago and now we have two lovely soles kicking it for JOA! We so love both of these sweet Marathon Mom’s that inspire us to keep moving for John Owen and to derail Duchenne!

Joe Vasil Burning River 100 MilerSo do you all remember the Energizer Bunny? Well, guess what? JOA has their own official Energizer Bunny in Joe Vasil… he really never quits. His mission is to clearly derail Duchenne each step at a time. I certainly know John Owen has affected his life tremendously. And if you know Joe, you know he is an avid runner. I am sure I am stepping outside the boundaries by sharing with you what I think about Joe and Duchenne…. I feel that Joe was profoundly affected by Mitchell Jones (10) and his passing early this year, I think, Mitchell’s passing pressed that panic button (that most of Duchenne parents know to well) in Joe. But the thing is, Joe is NOT a Duchenne Dad. Yet he feels it. Some how God has reached in and grabbed this man’s soul with the sense of urgency to cure Duchenne just as if JO was his own son.

How do you follow that with words? Not only do we sense Joe’s commitment to John Owen ~ he has stepped up to do what no one has done for him ……. EVER. Joe will run 100 miles in a row (yep, straight, no stopping, no sleeping, just running @30 hours or so of RUNNING) for John Owen and to derail this horrific muscle killer that is stealing our baby every day away from us. July 2014 You can be there. It is a Cleveland run ~The Burning River 100 . We can all take shifts and run with him, chat with him, cheer him on or provide pocket and prayer support.Joe Vasil A hero like none other.

7.17.1.3 Jett Riders On the heals of one amazing athlete, we move to many. Teens that give up their summer to ride their cycles across the country to raise awareness for Duchenne! We are so blessed to welcome them into our home on 7.17.13 where we will have a BBQ dinner (please come and do let me know if you can make it we will eat at 6 and all are welcome to cherish these young souls) and send them off to their next stop on Thursday morning. These kids ride all of July stopping each night at churches or any place that will welcome them from MN to NJ. Occasionally they are lucky enough to land a Duchenne Family that will provide a bed and a meal. They ride selflessly to raise awareness and funds for Duchenne. If you would like to day ride with them, check out our JOA Jett Ride page

The Fellowship just never ends….Owen’s best bud at school was nominated for an Every Day Saint Award for how well he sticks by Owen’s side and takes care of him every single day! When Owen read the nomination letter there was not a dry eye in the house ~ what a blessing he is! We had a blast with all the end of year Homework Burning School parties! We just so love our St. Albert the Great Families ~ built awesome memories. We received a donation from our St. Albert the Great Sixth Graders. They participated in an "EconoMart" to end their Economics unit. The students made and sold items and donated their profits! How amazing that this group of kids selected JOA to donated their profits to! Thank you again to the never-ending fellowship that constantly pours out of our community! Even the Bisler Family and the Schultz Fam got into the JOA spirit by both donating profits from their Lemonade Stands to JO. I really can’t tell you what it means to have these beautiful souls selflessly give to your child. Shows that there is so much more good in the world than bad!

Kilbane Kids Training for the Iron Horse

Bridgestone TicketsGreat blessing to have the opportunity to benefit from those that love to golf! If you are attending the Bridgestone August 2013, please consider buying tickets through JOA! Click here and use the code BALL13.9.15 Iron Horse Ride Our First Cycle in September is right around the corner! We were so inspired by the Jett Riders that we decided to do a cycle race this year! Board member Jennifer Briese is coordinating our first ever bike event on Sunday September 15 so plan on joining us for a Sunday afternoon of good times as we derail duchenne on pedal at a time! Register now for an awesome Sunday morning ride followed by a picnic lunch (all are welcome to attend the lunch) to celebrate this great event!Click here for all the info

Picture of Owen's bones.... creepy and cool

How are we doing?On every given day, we will say great. Because that is who we are. We are lucky, we are great, we are blessed, we are here. Does not change the fact that on every given day Owen gets weaker. Muscles Strength Gosh, I hope not, but Spirit We had our first full body bone scan (Dexa scan) last week. I did not hear anything until a few days later - so in my mind were golden. ‘Ah, yeah, this is Duchenne Jen, nothing is golden here’, bone loss (and I have NO idea what a -2 means, good bad or indifferent) the extremely rushed doctor’s voice on the other end of the voice mail clearly was not going to indicate good bad or indifferent in rattling off the results… but all in all it is still a decline.

Men at work - The boys with our neighbor

At times, it is so hard to keep a positive face because we know what the future currently holds. But we maintain hope in the break through therapies that are out there through GSK and Serepta. As of this writing, we have not heard from the FDA if they will approve Eteplirsen. But we maintain hope that what is to be will be. We try so hard every day to be present for everyone we love, not just John Owen. Keep reminding ourselves to stop and enjoy the moment because that is all we really have. I often find my self reading our Heroes Page to keep me strong and inspired by the phenomenal people that give so much for John Owen and Duchenne. Then of course all I really have to do is look to my wonderful husband and three kids in that I am lucky enough to hear and know how much love there is between us. The list could go on as to how lucky we are with the support of our family and of course each of you reading this. I guess we have to expect the heartache with the joy, you can’t have one all the time (thank goodness for that!)

We hope you will stop by one swim Tuesday to say hi. We certainly hope you join us on 7.27.13 for our biggest event this year.

And finally, we hope that you get to really get out and start living, stub a toe, cry, laugh, live!God bless you and much love,The Dumm Familyxoxoxoxox